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Month: June 2010

I’m so glad we’re not in NYC for Meteor Watch day. The light pollution in the city is so intense and would definitely mar our ability to catch a glimpse of any shooting stars. It makes me wonder if city dwellers are ever interested in heading out for a nature trek to see some of the more spectacular sights? Yes, NYC is filled with amazing man-made spectacles but there’s nothing like laying on your back under a blanket of thick stars and watching a star or two streak across the sky. I guess Times Square does have that Naked Cowboy – maybe that’s enough “streaking” for the average New Yorker? I really can’t say.

I just had a flashback from my days as a camp counselor. Now, while most of you would have imagined me as a counselor for children with special needs, I chose to spend two summers as a counselor for the over-privileged from the Tri-State area. Most of the children I worked with were from incredibly wealthy families. They were shipped off to camp for the entire summer and had to endure the following: blistering heat without A/C, no nanny to entertain them, no housekeeping staff, no personal chef, onslaughts of Japanese beetles, swimming in a lake instead of a temperature controlled private pool, and counselors who grew up poor.

Anyway, my bunk of kids were really very good despite their slightly-spoiled upbringing. My girls worked hard to pass their daily bunk inspection and nearly always won the “cleanest bunk award”. I made a deal with them that if they won this award “x-amount of times” then we could walk to the nearest pizza place (two miles away). This appeared to be incentive enough as my girls busted their behinds to win the weekly award.

The day arrived where their consistent victories would finally be rewarded. Armed with water, sunscreen and good footwear, we set out on our two-mile walk to get our pizza. About 1/2 way into it the girls started to lose their enthusiasm. The country air rung with cries of “Are we there yet?” and “My feet hurt!” I tried to make the walk in the country an adventure, but they weren’t buying it. Then, lo and behold, there was an animal up ahead in the dirt road. I immediately knew what it was since I’d grown up in a land fraught with agriculture. The girls, however, were terrified. As we drew closer, the animal strutted a bit quicker, its head darting back and forth making his bright red comb dance. Yes. It was a rooster. The girls completely lost their minds as we drew closer to the bizarre and exotic bird. And as we were passing by, the rooster seemed to sense their trepidation and exacerbated the situation by stirring up a little dust with his erratic movements. Screams sliced through the air. I explained that it was merely a rooster and he really wouldn’t hurt them at all. My girls had never seen such a thing. A rooster? What on earth is THAT?

It makes me wonder what their Fisher Price “See and Say” taught them? I have a feeling that while my version of the ‘See and Say” spouted phrases like “The Rooster says “COCKADOODLEDOO!”, that their “See and Say” stated “The taxi says “HONNNNKKK!'” or “The pedestrian says “I’m walking here!”.

Anyway, the girls were completely traumatized, which kicked up their speed a notch or two. We arrived at the pizza place in record time – covered with dust, dying of hunger, and a bit shaken from the encounter with the creepy farm animal – only to find out that the pizza place was closed. CLOSED? REALLY? This was back in the late 80’s, before everyone had a cell phone, so we were forced to walk all the way back. The girls were completely deflated. And overly cautious that a band of vicious roosters were gathering and waiting for us to pass through again.

We were able to make it back to the camp in time to enjoy the offerings of the cafeteria but the girls just didn’t have it in them to eat grilled cheese with their choice of tomato or tuna in the middle. I promised them that I would make good on the pizza. And while they didn’t find that particularly encouraging, I threw in that I would have it delivered directly to the camp and that we would have a massive pizza party and stay up late and toilet paper other bunks and have a silly string fight with the boy’s bunk of their choice.

I’m hoping that nearly 20 years later they’ve finally forgiven me. And maybe they think of me as they’re teaching their children about roosters. I can only hope.

Back to stars, Ben was recently featured on the Parents.com website for the story on Icing Smiles, the amazing non-profit that made Ben’s incredible Yoshi birthday cake happen. Check it out here: http://www.parents.com/blogs/goodyblog/2010/06/amazing-cakes-for-ailing-kids/ Ain’t he cute? He LOVED his cake and was sad to dismantle it. He wanted to keep it! I know his birthday wasn’t the best scenario, but so many people pulled together to make it special. I hope he’ll remember it fondly despite being away from home and going through un-fun cancer stuff.

Ben is also featured on Icing Smiles website at www.icingsmiles.org.

We’re back in Colorado now. We had a nice birthday party for Ben thanks to the Hoskins/Skogen family. They allowed us to come over and piggy back off a party they had earlier in the day. They had rented a bouncy house for their afternoon function so we were able to use it for Ben’s evening party. Mike Garcia, our dear friend from the Outback, came and brought lots of chicken and ribs. Ben played with his friends (and his new puppy, Yoshi). He had a great time.

This week we’re taking it easy. We finally heard from Ben’s treatment team yesterday and we are definitely going to start antibody therapy soon. So, we’ll start his round of shots here in Denver Â in preparation for him to receive the mouse antibodies in NYC. Madeline is most likely going to travel along this time since she is officially finished with Kindergarten. She’s excited to go to the big city.

I have a feeling that as she matures she’ll be more interested in the Stars on Broadway instead of the stars in the sky. But I sincerely hope she has an appreciation for the beautiful world God made for her.

No, it’s not propofol awareness day, but thanks to Michael Jackson’s untimely passing (one year ago today) the drug “propofol” has entered the realm of common knowledge. I’ve known about propofol since 2004 thanks to stupid cancer. It’s the drug of choice for anesthetizing pediatric oncology patients. Once administered, they’re out like a light. Once the infusion is stopped, the recovery time is fairly speedy. It appears to be a good drug unless you’re using it illegally for a sleep aid.

Ben’s getting some propofol in about one hour. While he used to have propofol for nearly every scan and procedure, he’s graduated to needing it only when bone marrow biopsies are performed. He does not need it for scans and radiation since he’s able to remain still, but for the biopsy, it’s a very painful procedure and he needs to be anesthetized. A bone marrow biopsy requires the doctor to take a corkscrew looking device and drill into his hips to take a cross-section of bone. Most hospitals take bone samples just from the back (or the butt dimples) but here at MSKCC they take samples from the butt dimples AND the front of the hips. In other words, it’s a “four point” bone marrow biopsy. They just want to ensure that there’s absolutely NO disease in the bone marrow and this four point procedure is more comprehensive than the “butt dimple only” procedure. Would you want to be awake for that? Me, neither. Bring on the propofol.

During Ben’s initial treatment for neuroblastoma we lived in Ohio. During one of Ben’s routine scans he was hooked up to propofol so he would remain still. Remember, he was only two-and-a-half when he was initially diagnosed. While Ben is very compliant it’s ridiculous to ask such a small child to remain completely still for an hour long scan.

The propofol administration is fairly labor intensive. It requires an Emergency Room doctor to be present to administer the propofol and remain for the duration of the scan to ensure stable vital signs. I believe that the administration of propofol was fairly routine. Routine enough that the doctors and radiology technicians were discussing plans for their weekend while going through the motions of Ben’s scan. Hey. I get it. It’s just a job to them. They have a life outside of their work even if we didn’t have much of a life outside of neuroblastoma.

Listening to them throughout the course of Ben’s treatment was sometimes very difficult. I’d hear about their children having trouble at school. I’d hear about their car trouble. I’d hear about bad dates. I’d hear about normal, everyday life. Admittedly, it was very difficult to hear about their children. “Joey made three goals during last week’s soccer game” or “Heather made honor roll this semester”. Hearing about their normalcy alienated me in a way that I couldn’t explain. And it wasn’t like they were telling ME about their children’s achievements, they were talking to their co-workers while I was in the room watching my son get scanned for possible cancer activity. Of course, their normalcy would often throw me into a tailspin as I scrambled to celebrate my sick child’s achievements. Yay! Ben scored the best possible score on his MIBG scan. Ben has a steady girlfriend despite the statistics that long-term pediatric cancer survivors live out the remainder of their lives in their parent’s basement playing video games. My son excels at chemotherapy. He always wakes up .10 seconds faster than the average propofol recipient. Excellent!

So, when the staff in radiology began talking about their plans for the weekend I tried to tune them out a little bit and just focus on Ben. Watching him breath. Making sure he didn’t move which would cause them to have to start the scan over. Praying. Hoping. Sometimes silently crying. And then the discussion in the room turned to concerts. The ER doctor started talking about seeing Bruce Springsteen in concert and how it was the greatest show he’s ever seen. Myself, I’m not a big fan of The Boss. Well, the main exception being the song “Candy’s Room”. But otherwise, I can’t see myself forking out ridiculous amounts of money to go to one of his shows, especially waiting to hear the one song of his I enjoy, which never really hit the mainstream and most likely would not be played in concert. What’s the point? That’s right. No point at all.

A random voice shook me out of my thoughts to tell me that Ben’s scan was nearly over. I breathed a small sigh of relief and continued to watch him sleep. Then I watched as the numbers on Ben’s monitor started dropping. Oxygen levels bottoming out. The alarm starting it’s piercing screech of something being drastically wrong. The numbers kept dropping. The conversation about Bruce Springsteen was halted as the staff started to swiftly move around Ben. I was pushed backwards by the staff, pinned between the wall and the ER doctor as they tried to wake up my son.

The numbers on the monitor kept dropping. I could hear my thoughts swirling in my head. I was crying out “what’s happening” in my mind but nothing audible was coming out of my mouth. I was pinned. Watching my son’s lips turn blue. Watching his face turn blue. Watching the life drain from him.

DO SOMETHING. (why can’t I say it out loud?) DO SOMETHING! DO SOMETHING!!!!!

Someone placed a mask over my son’s nose and mouth and started working the bag to get oxygen to him. No improvement.

Oh, God. DO SOMETHING DO SOMETHING DO SOMETHING. I’m watching my son die! His life is leaving him right before my eyes. My last moments with him are of me pinned up against the wall while the ER doc tries to revive him. Screaming monitors. Staff scrambling around him. This was supposed to be a routine scan! Stupid cancer. Stupid Bruce Springsteen. COME BACK TO ME, BEN! YOU CANNOT LEAVE ME!

Much too slowly the monitor started to record a strengthening pulse-ox. Ben was breathing again on his own and the color was coming back to his face. His lips were still tinged with blue when I cut through the wall of staff and leaned down to kiss his precious lips. I picked him up and started singing to him as he struggled to regain stability. Adrenaline cut through each muscle that had been taut with tension and I started to violently shake. I was suddenly exhausted. Thoroughly relieved. A mixture of tears streamed down my face releasing my fear and embracing my joy.

You’re still with me. You’re still here. You’re going to be okay.

I think I’m going to throw up.

I learned later – much later – that the ER doc had administered too much propofol and that’s what caused Ben to crash. As the scan was winding down, instead of stopping the propofol he pushed the rest of what was in Ben’s tubing straight through to Ben’s little system. Ben was overloaded. And it almost killed him in the process.

I blame Bruce Springsteen.

Admittedly, I get anxious whenever Ben’s scans come around, especially when he has to be sedated. And today is one of those days. Any minute now they’re coming to get him. Hook him up to propofol. Put him to sleep. Drill into his back. Drill into his hips. Causing him pain in the process of looking for signs of neuroblastoma, the stupid beast that is trying to kill him.

So my recommendation is “DON’T try propofol at home”. Leave the propofol administration to professionals, especially those who are competent and paying attention to what they’re doing.

I believe that today is one of many “take your dog to work” days available throughout the calendar year, so don’t despair that you’re just now finding out when the day is nearly over.

I’ve never worked anywhere that would have allowed me to bring my dog to work. I guess it’s because I’ve always worked customer service or food industry type jobs. Or maybe it’s because the dogs I’ve had have always been ill-mannered. Being a former HR person, I’ve often wondered if an employee can file a worker’s comp claim for a dog bite from someone else’s dog on “take your dog to work” day? These are the questions that haunt me at night. Seriously.

Ben got a doggie for his birthday. My parents came to visit Ben in NYC over the weekend and while they were here Ben wrangled them into a visit at “our” pet store. The end of this particular visit resulted in a new dog for The Bean. He is over the moon for this dog! “Yoshi” is part Havanese and part Shih Tzu, or a whole “Havasoo”. The dog is truly adorable. I’d add a photo here but I can’t get my computer to cooperate. Pictures to come.

So, Ben turned NINE yesterday. I woke up early in the morning and snuggled up next to him, just breathing him in as he peacefully slept. The newly minted peach fuzz on his head soft against my cheek. Nine. I am able to remember very clearly when I turned nine. And while I’m hoping that Ben forgets a lot of this treatment hooey down the road I sincerely hope he recalls the efforts by so many to ensure that he had a very happy birthday. He was really concerned about having to spend his birthday in New York City, away from family and friends, and enduring yucky treatment. I think, though, that he had a pretty great day.

I put the word out to my friends on facebook to send Ben a birthday card to the Ronald McDonald House. Boy, did my friends come through! As of today, Ben has received around 250 cards from people all over the United States and a few from exotic locations, like Barbados and Australia. The walls in his room are covered with cards. The outpouring of love has been phenomenal and I am sincerely grateful.

I started this post earlier today and now it’s, well, it’s actually a new day. It’s after midnight and while I should be writing about whatever holiday is on June 24th, I feel that I need to finish what I started.

I’m having a bad day. Bad evening. Bad year. I’m so over it. So over people. So over cancer. So over all the uncertainty of absolutely every little thing.

Forget it. My head is swimming and I can’t focus. Ben has scans tomorrow and I must have a huge case of “scanxiety”. I can’t make heads or tails of anything. Be back later.

Happy Birthday, Stronger Than I Look! You’re a year old now. You’ve reached all those milestones of rolling over, sitting up, eating cereal, sleeping through the night, crawling, and now you’re even walking.Â You’ve come so far but there’s still a long journey ahead of you. A whole life to be lived. Keep growing, little baby. You can do it.

I realize that I’ve posted just 1/3 of the last 12 months and missed many National Holidays along the way. I’ve decided that my blog will continue to celebrate National Holidays and how they apply to my life, since, oddly enough, they almost always do. Plus, I missed National Tap Dancing Day in May and you know I can’t miss posting on THAT particular holiday. Going forward, if I happen to post on a holiday that I’ve already discussed, well, I’ll reevaluate and see if anything else applies. Maybe something’s changed. Or maybe I’ll just find out what the word of the day is and see if I can use it in a sentence.

Regardless, I’m going to keep writing since I’ve got so much to say. I can’t keep it in because it drives me insane. Writing is my outlet. And if I don’t “say it, I’ll spray it”. Man. I haven’t used that childhood phrase for a long time. But it’s fitting here. Not writing about life will sit in me like the contents of a bottle of Coke that’s been shaken. Pop the top and KA-BOOOM! I’m sure you’d rather not have the contents of my life hit you in the eye and drench you with the high fructose corn syrup that embodies me.

Hardly. Today, I am exactly as strong as I look. I’m sitting here in the Ronald McDonald House in New York City at 1:27 PM on a Saturday. I’m still in bed, my Colorado Avalanche night shirt looking a little worse for wear. My hair is pulled back in a messy bun. Yesterday’s small bit of eye makeup still adorning my eyes, although it did slide down my face a bit. I’m a wreck.

Ben is playing Super Mario Galaxy 2 and excited about a two day break from the hospital. I’m letting him decide what he wants to do instead of having events planned for him – no required trip to a museum or National landmark – so he’s planning to go to the pet store on Lexington (he wants a small dog so very badly) and go see a movie (either Marmaduke or The Karate Kid). A low-key day is just fine with me.

I have to admit that I’m starting to enjoy New York City (Rhonda, you can say “I told you so” again!). I like knowing where things are. Dylan’s Candy Bar is on 3rd and 60th. Serendipity is just down the street from Dylan’s on 60th. Ben gets his Chicken McNugget fix on 1st Ave and 69th. Nintendo World is at 10 Rockefeller Plaza, just off 48th. I buy Madeline a supply of earrings on Lex and 64th and mail her a package every couple of days, so she knows we’re thinking of her while we’re here in NYC. The pet store we go to nearly every day is on Lexington, between 61st and 62nd. This place is the highlight of Ben’s day.

The pet store employees know Ben and are always excited to see him come through the door. They call out “BEN!” like he’s Norm from “Cheers”. They give him the option of picking out any dog he’d like to play with and we take it upstairs to one of the little play rooms. Lately, he’s been picking out a little Pomeranian he’s named “Princess”. She’s a wonderful puppy. She is very playful and Ben is hopeful that he can take her home when we leave NYC this time. Without bursting his bubble completely, I try to encourage him to just visit with her and enjoy the time we do have together. Don’t make too many plans. Take each day for what it is. I’m kinda tired of living life that way. I’m desperate to make plans. Solid, concrete plans. All the while, completely understanding that even solid, concrete plans change – even for those with a “normal life”.

I’m tired of not having a plan. Or having a plan that changes all the time. For instance, just when we felt like we finally had this radiation hooey all figured out (how many cycles, how many times a day…) our oncologist throws in a bonus round of chemo in conjunction with the radiation. Really? Thanks! That really made our day.

I haven’t written since arriving in NYC because the plan has changed at a rate that spins my head. We keep purchasing one-way tickets between Denver and NYC because we never know the plan or how long we’ll be here. As it stands currently, we’re here through June 25 to finish his 20 cycles of radiation (10 days, two sessions each day) and complete the necessary scans to “plan” what’s next. What I’m hoping will come next is finally getting started on this antibody therapy. Supposing this radiation does what it’s supposed to, we’ll leave here on June 26, start shots in Denver on June 30, and be back in NYC to start antibody therapy on July 5, which will go through July 9th. Then, maybe, just maybe, we’ll have a more predictable schedule.

If this plan doesn’t work out then I don’t even want to contemplate what will come next. If this next phase doesn’t happen that means that the radiation didn’t do what it was supposed to. That means that Ben isn’t clear of disease. That means that he might not be curable after all. That means that a life that is already fraught with emotional terrorism will escalate from Orange to Red (according to the color-coded chart compliments of Homeland Security).

But I’m not supposed to go there, right? Okay. I won’t.

One way that I’ve been able to work out my worries while in NYC is through walking. I walk everywhere. I borrow a wheelchair from The Ronald or from the hospital and I push Ben all over the city. It’s an exercise in dedication to find the perfect wheelchair for Ben. It has to be roomy enough for him to lay in the fetal position when he gets tired, there cannot be an IV pole attached to the back, the wheels must be properly aligned (or I’ll be stuck with what can only be described as a reject cart from WalMart). And it can’t have any gadgets or gizmos on the back that will interfere with walking. Yesterday, I maimed my toe on the metal gizmo that allows me to pop a wheelie over the curbs instead of dumping Ben out on the street. The injury I sustained yesterday hurt tremendously. I wanted to sit down and cry, but Ben was asleep in the chair and we were in the middle of Times Square. It was fairly crowded so I had nowhere to truly sit down to have my little pity party. I’ve decided though that I missed a grand opportunity to make some money. If only I had a cup, people might have felt bad for “The Crying Woman Who Was Bleeding And Had A Sleeping Kid With Cancer In A Wheelchair”. Passers-by might have thrown a dollar or two our way. Hey. It’s New York City. It could happen. Instead, I continued to walk to Central Park and up 5th Avenue leaving a tiny trail of blood. It was on my jaunt across 72nd street that I witnessed a pedestrian get hit by a taxi cab. He was thrown off his feet and out of the crosswalk. I heard his muffled cry from just a few steps behind me only to turn and see him flying through the air. The man was able to get up shortly thereafter. Fortunately, my autopilot kept making me walk until I had pushed Ben to the other side of the road. I stayed until I heard sirens and then walked the rest of the way back to The Ronald. Shaken. In need of a change of underwear.

So now I can add to my Times Square sign. “Crying Woman Who Is Bleeding And Has A Sleeping Kid With Cancer In A Wheelchair. Witnessed A Pedestrian Get Hit By A Taxi. Need Money. And Fresh Undies.”

Oh, this trip hasn’t been all bad. Sure, we’ve been shocked with additional chemo. Maimed by a wheelchair. Witnessed a man lose a match with a taxi cab. That’s some craziness right there. But we also got to participate in a dedication here at the Ronald McDonald House. Ben read a poem to the guests. I spoke about how great The Ronald has been to us. They gave us a box of butterflies to release, but since it was raining, we brought them back to our room to release the next day. Well, Ben decided to release them in our room that evening. Two days later I am still shooing butterflies out of our room through the teeny tiny crack of our seventh floor window. I’m guessing that The Ronald has had a suicide attempt or two since opening their doors here in NYC because you cannot open the windows more than an inch. Guess those of us who are on edge will have to take the subway down to the Brooklyn Bridge to end our sorrows.

Or cross at 72nd and Madison.

Thanks, loyal readers. I cannot thank you enough for walking with me through this nonsense.

Old Maid’s Day came about after the end of World War II when many women were waiting for their GI’s to return from the war. Some women waited a long time. And, of course, some GI’s never came home. It left a lot of lonely ladies.

I imagine some GI’s left their sweet young girl behind only to return to an emotionally encrusted nag of a woman. This poor woman had just spent years waiting for the love of her life all the while having her bonbons rationed. The GI had it rough? Not hardly. War is nothing when compared to no chocolate or bananas or tea or milk or rubber or gasoline. And for crying out loud, no TYPEWRITERS, PAPER OR INK! Had I lived during that era, I would have fallen apart. No writing? I mean, really. There’s no doubt that I would have been an old maid.

While I admire women of that era I’m certainly glad I didn’t have to live during those years. Plus, I don’t look good in the big shoulder pads that were fashionable during the 40’s. Luckily, I got to skip over that section of the 80’s when they came back in style. I opted for skinny jeans and Duran Duran boots instead of big shoulders. A better choice? No. But what were the options?

While my high school years may have been a bit dry in the boy department (I blame poor choices in hairstyles) I’ve more than made up for it in my adult years. The key is to go where the boys outnumber the girls. And it helps to be isolated to some degree. So the boys can’t just hop in the car and go to the next town where girls are plentiful. I suggest Summit County, Colorado (or any mountain town) and, if you’re truly desperate, McMurdo Station in Antarctica. This option is not for everyone since you have to pass a rigorous mental health exam, because once you’re there, you’re stuck. I’ve even heard that if you die at McMurdo, they stick you on ice until the thaw comes, which could be months. And, if you make a poor choice, you have nowhere to run. You’ll be stuck with that poor choice staring you down Every. Single. Day. While I’ve never had to resort to going all the way to Antarctica, I did take full advantage of Summit County back in my 20’s. But, as I’ve stated before, the odds are good, but the goods are odd. 😉 And it, too, is a small county. Your mistakes tend to haunt you in such a tiny community. I had to move back to Ohio after my divorce because I couldn’t go to the grocery store without someone asking me “Hey, Sarah! How’s ***?”. To which I would respond “Gee. I don’t know. I kinda hope he’s on fire.” But once one person knew then the whole county knew. It was worse than high school in some ways. At least I had better hair by then.

So, if you happen to be an old maid, you’ll take comfort in knowing that today is also “Hug your cat” day. And everyone knows that if you’re an old maid then the chances of you having a cat is pretty high. Evidently, I was planning from an early age to be an old maid because I’ve been captured on film hugging many a cat. See case file #OM1977:

This cat did NOT want to be hugged. In fact, I think I was shredded shortly after this photo shoot. I still have the scars to prove it.

Okay, gotta get ready for my final laser session of tattoo removal. Tattoos are like a one night stand in Antarctica. They might seem like a good idea at the time, but they never are. And the removal process is EXTREMELY painful.

I haven’t been writing/updating lately because I just couldn’t. I can’t really call it a writer’s block because I’ve had plenty of material – perhaps too much material – and it all went rushing through my head over the course of this past month. All I could do was go with the flow. Let the river take me. Navigate the rapids when I could.

My rapids weren’t insurmountable, say, a Class VI (which is considered “unrunnable” in the world of white water rafting), they were more of Â a Class IV,Â which can be described as “difficult to very difficult; long turbulent rapids with powerful waves and holes, and many obstacles requiring precise maneuvering”. And when I couldn’t maneuver, I just rode out the rapid, hoping I wouldn’t get caught by a strainer or pulled under water for too long.

I haven’t been on a rafting trip for about 12 years. Wait. How is that possible? I am very young and shouldn’t even be able to remember 12 years ago :). Anyway, on that last river run, I was dumped out of the raft right at a critical moment in paddling through a rapid. That had never happened to me on prior trips so it was quite a shock to be paddling one moment and then pitched into an icy cold river the next. The suddenness of it all had me reeling. I’d been through the drills of what to do when thrown into a rapid time and again, but having never had the real experience of it had me frantically recalling what I needed to do to survive. My teammates pulled me in before I got left behind and all I suffered were a couple of bruises. The bruise to my ego was particularly ouchy.

Happens to the best of us, right?

Interestingly enough, someone was standing at the river’s edge videotaping us as we went through the next stretch of white water. We got to see the video before packing up and heading home that same day. The video showed my teammates digging in with their paddles, a mix of adrenaline-soaked expressions and exhilarating shouts coming from the boat as we soared through a Class V rapid. But when the camera panned to me, the fear was evident on my face. I’d been thrown out just minutes before and here we were navigating another rapid. I was terrified of being thrown over again and it showed very clearly on my face. I was going through the motions, punching through the water with my paddle, digging in with all my might, but my expression was completely different. Where my teammates were enjoying an incredibly thrilling moment, I was scared to death. I was afraid of it happening again. A repeat. Relapse.

Relapse. I hate that word.

We’ve been through all of this with Ben before. We “made it” to the other side of therapy and enjoyed four years of Ben being in good health. We had been tossed out of our raft in 2004 but we braved the rapids and said good riddance to the Beast Named Neuroblastoma in 2005. And I wrote, multiple times, that if we could just keep Ben from relapsing we’d be in good shape. We’ve known kids who made it through initial treatment and survived long-term. We don’t know many – or any – kids who have survived recurrent neuroblastoma long-term. A repeat of this disease, well, we all could have done without that.

Four years. Four years that sneaky neuroblastoma waited before making a comeback. Repeat performance. Recurrence. Relapse. And we’re coming up on the one year anniversary of starting all of this hooey over again. My face might not show the raw fear of what my white water video showed but I know I’m exhausted. Tired. Worn out. And, unfortunately, we’re not even close to being finished with his therapy. We can’t get that stupid spot to go away so we have to do some more radiation. We were in NYC last week for simulation (he got FIVE tattoos) and we’re supposed to start therapy June 10. We’ll most likely be flying back to NYC mid-week to start therapy.

June 10 is also the day of Madeline’s first acting performance. Her Kindergarten class is putting on “The Three Piggy Opera”. And I’m going to miss it. Just like I missed her very first field day where she excelled at jumping over hurdles. And her first day of Kindergarten. And all those milestones the first year of her life because we were constantly in the hospital battling neuroblastoma. She recently told me that she believes I love Ben more than I love her. Her carefree and gregarious spirit is being crushed by this evil beast. Flipping cancer. It’s not that I’m upset that you tried to ruin our lives once, it’s that you’re trying to do it again. Your repeat performance was so unnecessary.

So, let’s talk about something much more funner than cancer (I said ‘much more funner’ on purpose despite knowing that it is hideously grammatically incorrect). During our last trip to NYC, The Ronald McDonald House held a Spring Social for the families. We got to choose formal wear and had our hair and makeup professionally done. The event was held at the New York Athletic Club. Very fancy. I picked out a beautiful yet simple black dress. Ben got a tux (set off by wearing his favorite bright green crocs). I got my makeup done, which I wasn’t exactly thrilled with, but it was a formal affair so I had to be okay with wearing more makeup than usual. I just wasn’t excited that she put blue eyeshadow on me. Ick.

Then I waited for my turn with the wonderfully flamboyant hairdresser. I thought I’d go with a simple “up do” since my hair is long enough for that now. When the hairdresser was ready, he pointed at me and said “get on my throne”. I obeyed. He leaned down, looked in my eyes, then toyed with the ends of my hair and said “this hair is heaven. I love it.”, which made me slightly delighted. He didn’t give me a choice of saying what I’d like to have done, he just did it. He said, “This calls for Rita Hayworth in “Gilda” hair.”

Ms. Hayworth had a bit more wave than my stick-straight hair. The hairdresser actually said “If I was as straight as your hair, I’d have kids.” Then, much like Edward Scissorhands attacking a shrubbery to make it into a glorious topiary, my hairdresser went to work.

ï»¿ï»¿ï»¿He sang “Put the Blame on Mame” as he worked on my hair and told me stories about Rita Hayworth herself. My hairdresser was a very famous drag queen back in the day and very close with Rita’s daughter. He actually got to meet Ms. Hayworth, who was unfortunately in the middle stages of Alzheimer’s.Â He told me of the time that Ms. Hayworth threw an ashtray at him because she mistook him for Frank Sinatra. I didn’t get any back story on why Ms. Hayworth would have any beef with Mr. Sinatra but it makes for a delightfully interesting story.

As he was finishing up my hair he asked who would be doing my makeup. I told him it was already done. He crouched down to my level, forcefully turned my face from side to side, and vehemently stated, “NO! I want MORE! More eyes. More lips. More!” He made me point out my first makeup artist, clucked a “tsk-tsk”, apparently for her inability to do makeup properly. He said, “Good GOD! You’re going to a party, not a funeral. Blue eyeshadow. Who uses blue eyeshadow?” And I was terrified at the thought that this man, a former very famous drag queen, was picking up a makeup palette and loading a brush with eyeshadow that would be directed at my face.

After a mad flurry of powder, he stood back and said “There. That’s how it’s done,” loud enough for the incompetent makeup artist to hear. Â Then he handed me a mirror. Opening one eye at a time, I slowly saw the waves in my hair and eyeliner and glossy lips and, wow! I was stunned. Ben had fallen asleep on the couch wearing his sweet little tux and green crocs. I woke him up gently, telling him it was time to leave for the party. He opened one eye at a time, taking in the transformation of his mother. At first, he was concerned about the hair. Then he said, “Wow. You’re beautiful.” We got up, grabbed our stuff, and headed for our limo to the party.

We had a wonderful night. Just me and my son dancing and enjoying a nice evening out on the town. Forgetting about cancer, even if it wasÂ just for a little while.